rissakaye

My ds had an eyeroll tic if he eats dairy and one thing that we have noticed is that since we cleaned up his diet to eliminate dairy (meaning that almost all foods are made scratch instead of using some processed foods) is that ds is a whole lot calmer. At times before this ds would walk up to his sister and just yell at her while she was reading on the couch or just get monumentally frustrated with himself and have a crying fit. Now my ds is eating no dairy, he has really just been calmer and easier to get along with. He isn't perfect by any means, but it just seems like he's more relaxed about thing. We had originally thought the outbursts were because he was hungry because that was usually when they happened. Now when he gets hungry, he's still a bit grumpy, but it's not to the same level. The interesting thing is that my ds's vocal tic came back after Halloween (probably due to hfcs or dyes). The tic has pretty much faded now. But yesterday, he had a 25 min. total crying meltdown over spelling homework which has never happened. Yesterday was a field trip and a few other different things, but it did strike me as odd that he had that total meltdown after a tic episode. I don't know if the meltdowns, anger and tics all interact. I know that during tic episodes ds is more angry. I know that diet causes the tics for my ds. I don't know if the anger is caused by the tics or is another symptom of ds's issues with certain foods/dyes/additives. I know that by eliminating dairy for the tics, we also eliminated most dyes and hfcs also. What specifically is responsible for the anger, I don't know. I hope you find an answer. Marissa

Unfortunately, in my experience, the mainstream medical dr's that I have talked to have very little knowledge and/or tolerance for any discussion of how food and neurological things like tics interact with each other. I was told by an allergist that my son was just acting to please me. He declared food interactions with tics impossible and he wasn't going to believe it. My regular dr. wanted my son to see a neurologist that has a horrible reputation within the community and online horrible reviews for "missed diagnosis". I hope that you have better luck than we did. The best advice I can give you, is to do some trial and error with food. Eliminate one major allergen at a time. Keep a journal of food and tics and compare. I had a pretty good clue that dairy was my son's culprit. And it was. Three days without dairy and my sons eyerolls were fading so fast it seemed crazy. Now we had the vocals that happened to coincide with the food dye/hfcs high of Halloween. We're fortunate that my son's tics, comparatively, have been easy to figure out. We've seen a huge difference in ds's writing at school also by eliminating the dairy. Even before the tic was visible, it was affecting him. Dairy and gluten seem to be the 2 most common tic triggers. Also the dye's and artificial ingredients. I cook generally from scratch. I enjoy the organic products at the store and vegan products. My son has to avoid dairy and tree nuts (known allergic reactions for him) and also he tests allergic to peanuts though he has never reacted. That means our processed food is kept to a minimum. Ds still does eat wheat and gluten. It's different for every kid. Ds has been very willing in all of this. He originally seemed to be my pickiest eater. Now, looking back, I realize that what he didn't want to eat was almost all food that included dairy in it. His body was trying to keep him away from dairy naturally. I feel like I finally understand the rules for feeding him and he has become a much broader eater. He eats a wider variety of foods now than ever. He also is so happy when a food is safe for him that he's delighted to try it. I hope you find some answers. Marissa

Today is day 4 after the dye and hfcs and ds's vocal tic has virtually disappeared. I know if he eats dairy, by day 4 the eye roll tic will be gone. So, best guess is it's the dye and/or hfcs. Ds is actually really, really good about giving up what doesn't help him. Not that there haven't been a few tough moments. I'm good in the kitchen so I'll usually whip up something that convinces him the world didn't end and we go on with life. I re-looked at all his normal foods. He's eating dye-free and hfcs free with his normal foods. I actually hadn't done that purposely, but I've always tended towards scratch cooking and real ingredients. I had also heard/read about Feingold diet when the kids were very little and I was never inclined to buy much that included a lot of dyes. Halloween was the one time of year when we did allow it. I'm just glad that today he's back to his happy, non-ticcing self. Marissa

Wondering if anyone else is feeling the same way. My ds had been doing so well just being dairy free. No tics for a good stretch. We had not taken him completely off of food dye, but since most of what we eat is fresh/homemade, I hadn't worried about the very minute amounts he sometimes got. Food dye just really isn't much of an issue around here. And then Halloween. Since ds couldn't have the chocolates, I was letting him have the candies. Yesterday he came home from school and his vocal tic was in full force. It's still going today. He can mask it with gum chewing, so compared to what some tic kids deal with, his is mild. He's frustrated because we had such a good stretch without tics. My guess is it is the food-dye or the hfcs. He hasn't had any candy since Sunday afternoon. I'm hoping that once we get a few more days of his regular diet back in him, we'll get back to where we were. Food dye and hfcs aren't very much a part of his regular diet anyway. Marissa

Dairy does not show up for my son on an allergy test, but he lives dairy free now because it makes such a difference for him. Ds had an eye rolling tic and a vocal tic. If we feed him dairy, the eye roll shows back up immediately. The vocal tic has faded over time the longer ds has been off of dairy. Ds drinks soy milk (he has major tree nut allergies which make almond not a possibility). I use unsweetened coconut milk beverage for cooking. You can use coconut oil or a few other substitutes for butter. There are some wonderful coconut milk based ice creams. We haven't found a good cheese substitute, but ds feels so much better and enjoys not ticing so he is okay with not having cheese. I don't think that ds would cheat now even if he had the chance to. He just feels that much better. We saw quite a bit of improvement after 3 days. Things have continued to improve over time. We're at about 5 months now. Marissa

I would give it longer than a week on dairy free before making up your mind about. My son's been dairy-free for a period of months now and the improvements build over time. Also, sure that you are getting all of the dairy. It's a hidden ingredient in so many things. Honestly, I haven't worried about calcium with my son. He had refused to drink milk from an early age and I'm delighted that now he's drinking soy milk happily and getting a consistent source of calcium. Most days he gets close or at recommended levels from his soy milk and the coconut milk I use. (He has a tree nut allergy so we use soy for drinking and coconut milk for cooking). I think that other people will be able to help you better with your other questions. I will say that I found the allergist to be to the least helpful person. He told me that my son was faking everything to please me. Even both of my 9 year old twins commented on rude the allergist was. Hopefully someone will have recommendations for you. I've decided to forgo pursuing a lot of dr's and work on just getting my son to eat better food. For us, that's what has helped. Marissa

My son likes the So Delicious coconut milk ice cream better than the real stuff. We were just at the store getting more of their fudgsicles. We really like it. I also use the So Delicious unsweetened coconut milk beverage for baking and cooking in place of milk. The whole family agrees that it makes the food better. I use it mainly in biscuits and muffins. The hardest thing for my son has been no pizza and no cheese on his burritoes. Everything else we've found a good substitute or ds really just wasn't that attached too anyway. For a little hope, my ds has been dairy free for a few months now. We did cheat a bit over the summer because we weren't in school. Now that school's in, we've clamped down and ds has been fairly strict on the dairy free for over a month. The differences are really amazing. It was honestly affecting him in ways we didn't realize. I'm not sure my ds would go back on dairy if you gave him a choice. We've discovered it was the cause of the mysterious stomachaches. When he's been allowed to cheat, he gets a stomachache. He's nicer and less frustrated. I have writing samples from last year that I can compare to this year. It doesn't even look like the same kid's writing. The art teacher commented how much better ds's art is. I saw his locker art he did in art class. I re-checked to make sure it was the right locker because it was neat, well-done art that in no way resembled the chicken scratch I saw last year. He loves reading and doesn't get near so many headaches. I can't wait to see how well he does in school this year. He's always been considered advanced, but now I think we'll really see what he can do. And on the tic front, I haven't seen the eye roll in a long time. As far as I know, we haven't had a vocal tic in a few weeks. Ds chews gum to mask it and we haven't been using any gum lately. All that was from getting rid of dairy. I don't know that ds ever wants dairy again in his life. Marissa

My son had never eaten a lot of dairy. He refused milk as a young child and detested childhood standards like mac-n-cheese. Pretty much the only dairy he ate was the occasional ice cream, pizza, or cheese on burritos. Also those things where milk was a hidden ingredient. He never liked much of anything else with dairy in it. Something else is that ds is the 5th generation in my family to not be able to handle dairy. My ds's tics are probably the some of the mildest possible. He has the eye roll tic which we can literally watch come and go with dairy. (We kept a food journal and tried alternating elimination and letting him have dairy.) He also has a super mild vocal tic which ds can mask with gum. My dh and his brother also have a few mild tics. It appears that for us, the tendency towards very mild tics is genetic from dh's family and the tendency towards dairy issues is genetic from my family and ds was the unfortunate recipient of both of those tendencies. Marissa

I don't know if you're dairy free or not, but that is the trigger for my son's eye-rolling tic. Taking dairy out of his diet made a huge difference. Marissa

I'm glad you're seeing such success! Even though we're realizing now that there is some genetics at work with my son and his tics, dairy makes a huge difference for him. When we eliminated it, his life became better. And my son has also been willing to try new foods as well. Marissa

I don't have a complete answer yet, but I truly believe it can be diet. If we let ds eat dairy, the motor tic returns. Doesn't eat it, it's gone. I've been dropping dyes and artificial things out of ds's diet and the vocal tic is fading. After we get back from a trip we're taking we're probably going to do a gluten free trial. Marissa

He was just allergy tested. Nothing we didn't already know about showed up. The allergist was an arrogant, self-righteous jerk who was very unhelpful. I'll try and remember to ask our family dr. about it next time. We just always joked that ds would be a horrible poker player because of it. Marissa

Dh and I were talking last night about ds and his tics. One thing that we observed is that when ds was younger (probably from age 2 and up), if he was in trouble or really uncomfortable or upset, his face would start blotching. He would get red splotches on his face. They were almost like hives, but wouldn't raise or itch. I'm not even sure he knew it happened. Now in those situations where he used to get the splotches, he tics instead. Has anyone else experienced this? Any bright ideas on if the 2 are connected or related or why? We asked our pediatrician at the time about it and he had no real answers about it. Marissa

I have found this forum to be extremely knowledgeable. My ds started with a motor tic. I read on here about dairy and motor tics. We eliminated dairy and that resolved. So what I'm wondering, is what are the top triggers you all have found for vocal tics? Ds's tic is small and controllable with gum, but he'd like it to be gone. He's also been excellent about keeping a dairy free diet because he is adamant that HE doesn't want that motor tic back. So ds is definitely of a mind to go along with things and try them. Any ideas or suggestions? I know that gluten comes up a lot. I have a celiac bil so I know what gluten free involves. I'm a bit hesitant to try that one because ds is a carb kid. Giving up dairy didn't really hurt that much because he didn't like much dairy anyway. Gluten free would be a whole new level of commitment for him. Marissa

Talking about tics does increase them for my ds. TV doesn't, but he barely watches that. I've actually noticed the vocal tic comes out in more in 2 particular buildings that likely have mold issues. Also, I notice them pop up when he thinks/knows he's in trouble. Marissa

I would ask this question over on the PANDAS/PAN board on this site. That board's quite a bit busier and there are multiple poster over there who deal with methylation issues. I think they could probably help. Marissa

First of all, I'm not sure if we're over here or going to be in PANDAS. The more this goes on, I'm thinking here, but there's a 72 hour strep culture running right now that should give us more info. My ds developed a motor tic about 2 months ago. After reading on here and seeing him after an ice cream binge at Grandma's, I decided that he needed to try going dairy free. The tic disappeared. We can give him dairy, it comes back. That's been pretty reliable. He also developed a small vocal tic. I'm still working on that. So I decided that it was time we finally allergy tested ds. We've known about seasonal allergies since he was 3. We've also known about tree nut allergies since right before he was 3. Nobody on my side of the family drinks milk so dairy and him probably genetically weren't going to get along anyway. I just wanted the specific list to see if there were any triggers that I could eliminate. Today was the test. I have never walked out of a dr's appointment, but I almost did. Even my daughter commented on how rude the allergist was. We went to this guy because one of my friend's highly recommends him. Her daughters have severe food allergies. She also mentioned that he had also referred her to a homeopath which I took as a good sign that he was a bit open to non-mainstream things. Boy, was I wrong. He almost yelled at us the whole time. He was just incredibly loud. He referred to dairy being a cause of ds's tics as "preposterous." I mentioned I had weeks of food journaling with tic info. He said he didn't care. The only way he was going to believe it was if I showed him a double-blind test about it. He thinks that ds was just acting to please me. Ds can't even duplicate the tic when it's not happening. He's tried. He kept listing his credentials as to how smart he was and how many associations he belonged to. It was honestly the most infuriating dr's appointment I've been too. I guess the only bright side is that we got the allergy test done and I now have a list of allergies for my ds. Going forward, we'll see what the result of the strep culture is tomorrow. Then, I've told our primary dr. that I'll talk to a ped. neurologist, but I will talk first. If they have tests that they can explain as to why they might help, then we'll probably do them. But I just need to talk to a dr. first to have confidence in them. I wish I had insisted on that today. The other part that I'm weighing is how far do we push finding out the cause of the tics? Ds, so far, has just had a small motor tic that disappeared with the dairy elimination and a vocal tic that he can mask with gum. At this point, how far do you chase it? Marissa

Just for clarification, ds has only ever been swapped for strep once and it was negative. That was back in first grade when the school nurse thought she saw something in his throat. That's the only time he's been suspected of having strep. Now, we can look at his aso titers and see that apparently he has had strep and, based on the lab values they use, he was considered higher than normal. So, no, he's never had antibiotics for strep because we're only seeing in retrospect that he had strep. Likely, I'll be calling the dr. tomorrow about strep anyway for me. I have an insanely sore throat where it hurts to swallow. Last night, I was in bed by 8:30 because everything between my ears and the tops of my shoulders just ached. I figure it could be a good conversation started on that strep might be in the house and ds is ticcing very mildly. Marissa

Thanks so much for the help. Unfortunately, our dr. won't prescribe the antibiotics unless I do the full neural consult with ds. That's part of what I've found sooo frustrating about it. I feel like a round of antibiotics would help pick a clearer direction to go. It's also easier and less disruptive for my ds, not to mention cost-effective. But our dr. won't do that unless we first go to the neurologist and let him test ds and pronounce his opinion. I guess what I'm getting from this is that PANDAS would be questionable for my ds because his tic is getting better without any use of antibiotic? We've also never had anyone in our house be diagnosed with strep or be treated for strep. Obviously ds has had it because of the titers, but it seems to be something that none of us get strong symptoms for. Marissa

Thanks. We stopped all dairy fairly quickly. We did test him with some dairy to be sure it wasn't just coincidence that the ticcing stopped at the same time as dairy elimination. He doesn't have any dairy now and hasn't for a bit. Ds has never been treated with antibiotics for strep. I think the last time he had antibiotics he was 3 or 4 for bronchitis or RSV. I'm noticing that after a week, this vocal tic has really faded to almost nothing today. Would that be "typical" for not having had any antibiotics? He's even upset now and over-tired (grandma let his stay up several hours late last night) and I'm not hearing it. Ds still seems to be his same, happy self. He's always been a touch "sensoryish". But that has been since he was a baby. We tend to buy the same brands of pjs because he likes how those feel the best. (For what it's worth, I think they feel great too). He's always had a touch of food sensory issues. To this day, he still has trouble with some meats because of feel. But that's been him his entire life. It's not magnified or grown at all. If anything, the taking dairy out of his diet has made him much more willing to try foods and really broadened him. Activity wise, he's trying new things this summer and is open to anything that is very physical. He plays soccer and is learning rock-wall climbing and fencing this summer. I think the closest PANDAS dr. is Dr. Cunningham at OU. Our dr. puts all the labs on-line so I can see/print all lab results at any time. I guess where I'm torn is dh isn't really that concerned yet. I tend to research out everything to see where we might end up so I recognize it when we get there. Dh is looking at this going, oh yeah, my brother had hiccups for a year once which no meds helped. And him and his brother, even now, both have annoying tiny, tic-like coughs for about 2 months after they've been sick. They both sit there and cough at regular intervals for a while and have no clue they are doing it. No dr will comment on whether or not either of those things count as tics. I have asked. So to dh, he thinks there will probably be just annoying little tics that pop up along the way that we'll deal with. I was okay going along with that until I realized that sore throat equaled tic 4 days later. Thanks. I'll try and figure out what's next after the allergy test. I want to get through that first. Marissa

My dh is a software engineer. His great-grandfather was an electrical engineer and his great-uncle owns several patents in the oil-field/drilling industry. My ds that has tics is extremely proficient in math and was explaining to me today that he just looks at things and knows how they work. And then he started explaining it all. Marissa

I'm just starting out here. I'm suspecting PANDAS, but I feel like we're still in the investigation phase and trying to find all the puzzle pieces. My ds is 9. He started having an eye roll tic back in April. After he came home from Grandma's house with his eyes rolling multiple times a minute and finding out he literally had a dairy and processed carb diet while there (seriously, dinner was ice cream sundaes), I googled food allergies and tics. I found these forums at that point and saw many of the tic kids had dairy eliminated from their diets. When we eliminated dairy, that tic went away. If we give him dairy, it comes back. That has been pretty reproducible. My PANDAS suspicions started when we first went to our family dr. He is familiar with PANDAS and has treated PANDAS before. Ds's aso titers were a bit high, 347. I'm very sure, in hindsight, that me, dh, and ds all had strep in January. All 3 of us got insanely sore throats for 2 days and then just sick for several more. My dd (ds's twin) didn't seem to get it. What really has made me suspicious is that ds had a new vocal tic show up. It showed up 4 days after he was complaining of a sore throat. I didn't put the tic and the sore throat together as possibly connected till about 5 days ago. By then, he felt fine. Going forward, ds has allergy testing next Wednesday. We know that he has seasonal allergies and tree nut allergies. I really am wanting to know if the dairy is an allergy or does it fall into intolerance or possibly the strep used in processing dairy affecting ds. If any other food allergies show up, I will work on eliminating them. From a dr. standpoint, I'm at a bit of a stand-off with our family dr. I really like him and is willing to consider PANDAS. He just wants us to go to a certain neurologist. This neurologist has absolutely HORRIBLE reviews on-line. Seriously, no recommendations. I also work in special ed. Nobody I know will recommend this guy. He also wants to run an eeg before even talking to us about what's wrong. Unless I'm missing something, an eeg wouldn't really be of much assistance here. There is another neuro in town, but he has a reputation of being even more test crazy. Which leads to the stand-off. Our family dr. won't help us anymore till we see a neurologist, but I'm not convinced of the competence of either of our choices. So, here's the summary. Ds, 9, has a motor tic which is controllable by eliminating dairy. Ds developed a vocal tic within 4 days after complaining of a sore throat. He has shown elevated strep titers. He has messy handwriting that has been pretty bad his whole life, but occasionally is unreadable. He shows no other signs on the PANDAS symptom list. I plan on seeing what comes out of the allergy test next week and working on diet from there. I also plan on checking back in with our family dr. after the allergy test and seeing if he would order the Cunningham Panel for us. Any advice on if we should pursue the Cunningham Panel? Should I just suck it up and do the neuro and the eeg? Should I be looking more at Tourette's? Ds is generally a very healthy kid. He's active, plays sports, does extremely well in school and is advanced at math. He gets a bit silly sometimes, but can tone his behavior down when needed. Thanks, Marissa